I Care for Rare
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My heart always beats for these lovely children and I cannot rest until. I see a a day when there is no Undignosed case in India and every one get the treatment for all treatable diseases. During launch of “I..
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Category Archives: Activities
ORDI – Racefor7-2018 coverage by Digvijaya TV during press Meet
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Racefor7-2018 coverage by Digvijaya TV..
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ORDI Race For 7: a run that will change lives
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ORDI- Race For 7: a run that will change lives ..
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ORDI Video by Savr Kumar
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This video compiled by Mr Savr Kumar ..
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Karnataka Patients delegation visit to Meet Health secretory
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Karnataka Patients delegation visit to Meet Health secretory for treatment. ..
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My Media Statement on Court order on Insurance
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” In Rare and Most genetic Diseases, The cost of treatment is very high, The patient has to undergo treatment through supportive care. My Media Statement on Court order on Insurance coverage for Genetic Diseases..
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Mr Shahid Akhter Deputy Editor, Economic Times Online Healthcare
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Meeting Mr Shahid Akhter Deputy Editor, Economic Times Online Healthcare during my interview in Bengaluru..
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12th Annual ICORD Conference 6th China Rare Disease Summit
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I was a Speaker at “12th Annual ICORD Conference 6th China Rare Disease Summit” representing ORDI and Indian Rare Disease community. This was organized by International Conference on Rare Diseases and Orphan Drug, Chinese Organization for Rare Disorders , Peking..
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Long Wait for Rare Disorder Patients
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Long Wait for Rare Disorder Patients IIJNM Bangalore Published on 5 Sep 2017..
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Interview in ETHealthWorld
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In an interview with ETHealthworld, Prasanna Shirol, Co- Founder and Executive Director, Organization for Rare Disease India, Bengaluru, talks about the bottlenecks that still exist even after the formation of rare disease policy...
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First exclusive Day care center for Rare DIsease in India
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At First RDCCC Rare Disease Care co ordination center at Indira Gandhi Institue of Child Health Bengaluru First exclusive Day care center for Rare DIsease in India...
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ORDI Race for 7 -2017- Press Meet coverage
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Race for 7 Media Release- My Quote “Rare diseases are not really as rare as we think there are. It is estimated that there are 70 million rare disease patients in India and one out of every twenty Indians suffer..
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Met high school classmate Mr Rajesh Mattigatti – Engineering Specialist for medical devises.
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After 28 years met my High school classmate Mr Rajesh Mattigatti. Who is a engineer and specialized in engineering the medical devises and products. Most of families with rare diseases have medical devises which are costly and many times imported..
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IGICH Approval to establish India’s 1st COEMRD – Day Care Ward
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Today was one oof the happiest day in my life. After year long discussion the proposal to set up COEMRD ( Center of Excellence for Management of Rare Diseases. was approved by steering committee of IGICH ( Indira Gandhi Institute..
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CME on Pompe in NIMHANS in Bengaluru
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CME on Pompe in NIMHANS in Bengaluru was conducted. This was attended by Dr Meenakshi Bhat, Dr Asha Benakappa- Director IGICH and Other Doctors from bengaluru..
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Precision medicine can offer HOPE to Rare Disease Patients- Bio Voice News
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Precision medicine can offer HOPE to Rare Disease Patients. The Rare Diseases have not received the attentionthey deservedwithin the health Policy Initiatives in India , feels Prasanna Kumar B Shirol.v- Bio Voice News -Aug 2016 Download PDF for full..
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